Living with a rare condition
Marc Wübbenhorst from the German city of Bielefeld drank at least 10 times more water than the usal daily intake of two litres a day for most people – due to his unique condition ndi. „To tell his story meant to support others as well. People with rare diseases should find thereselfs in a strong community“, Marc says.
It really has been 20 litres a day! That is around 5 gallons. After taking diuretics much has changed. My goal is to inform about nephrogenic diabetes insipidus. I would love to share my experience with you. It’s important to support others and to inform about nephrogenic diabetes insipidus.
Marc Wübbenhorst
Acceptance, empowerment, humour, changing the circumstances, it is about making the best of it. There is always a good solution, an oasis or well. All make a journey and have a package to carry. For people with rare diseases it is very important to share their stories and get connected.
Marc from Germany has nephrogenic diabetes insipidus (renalis). It’s a rare disease, only one person in 250.000 has this. It is inherited, so he has it from birth. Some years ago, Marc told the world that this exists. 300 milion people might have seen this, and others with the same condition where invited to tell their stories as well.
The condition – which, despite its name, is unrelated to diabetes – is an inability of the sufferer’s body to retain fluids. Unquenchable thirst and sleepless nights are symptoms. These days, Marc Wübbenhorst says he can live with his condition and manages to cope with it with the help of generous doses of humour. „Make the best of it!“
I drank everything. Not by force, but driven by unquenchable thirst due to my condition. Today it is much less, but nephrogenic diabetes insipidus cannnot be healed. I always was that thirsty. But honestly, I do love all kindd of drinks. Water is the best. Fresh water should be accesible for everyone on the planet.
Marc Wübbenhorst
Medical background
Nephrogenic diabetes insipidus (also known as renal diabetes insipidus or diabetes insipidus renalis) is a rare form of diabetes insipidus primarily due to pathology of the kidney. This is in contrast to central/neurogenic diabetes insipidus, which is caused by insufficient levels of antidiuretic hormone (ADH, that is, arginine vasopressin or AVP). Nephrogenic diabetes insipidus is caused by an improper response of the kidney to ADH, leading to a decrease in the ability of the kidney to concentrate the urine by removing free water. It is said, that statisticly only 1 in 250.000 people have this.
Since 2017 Marc has been running an outraging media campaign to spread the word of nephrogenic diabetes insipidus . His goals:
- awareness
- support
- counseling
- research
- connecting people
- fresh water
FAQ and correction
In some media i am called „architect„. I never called myself as such. I am not an architect. I used to study education and history, some protestant religion in Bielefeld and Groningen.
It´s all for the kids, and those, who are in need or fear from the darkness. It´s for the mums, the sleepless nights and the exhausted. It is for those, who are not recognized. I made this for them. It is about the fever, the nightmerries, the tiredness. It is about hope, love and family.
Marc Wübbenhorst
